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About 100,000 Americans have sickle cell disease (formerly known as sickle cell anemia). Most of them are black. And many of them have faced challenges from the health care industry in getting their condition addressed.
Sickle cell disease can cause chronic pain, multi-organ failure and even lead to strokes. Kaiser Health News reports that patients and their families say the search for treatments is “slow, underfunded, ineffective or too limited in scope.”
In summer of 2017, the FDA approved a new sickle cell drug — the first in two decades — making it just the second option on the market for patients. It recently hit pharmacy shelves, but insurers have backed away from covering it, leaving the average monthly cost of $3300 up to patients to pay.
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